Group concept mapping conceptualizes high-quality care for long-stay pediatric intensive care unit patients and families

Objective To describe and conceptualize high-quality care for long-stay pediatric intensive care unit (PICU) patients using group concept mapping (GCM). Study design We convened an expert panel to elucidate domains of high-quality care for this growing patient population for which transitory care models fail to meet their needs. Thirty-one healthcare professionals and 7 parents of patients with previous prolonged PICU hospitalizations comprised a diverse, interprofessional multidisciplinary panel. Participants completed the prompt “For PICU patients and families experiencing prolonged lengths of stay, high quality care from the medical team includes ______”, with unlimited free text responses. Responses were synthesized into individual statements, then panelists sorted them by idea similarity and rated them by perceived importance. Statement analysis using GCM software through GroupWisdom generated nonoverlapping clusters representing domains of high-quality care. Results Participants submitted 265 prompt responses representing 313 unique ideas, resulting in 78 final statements for sorting and rating. The resultant cluster map best representing the data contained 8 domains: (1) Family-Centered Care and Shared Decision Making, (2) Humanizing the Patient, (3) Clinician Supports and Resources, (4) Multidisciplinary Coordination of Care, (5) Family Well-Being, (6) Anticipatory Guidance and Care Planning, (7) Communication, and (8) Continuity of Care. Conclusions GCM empowered a panel of healthcare professionals and parents to explicitly describe and conceptualize high-quality care for patients and families experiencing prolonged PICU stays. This information will aid the effort to address shortcomings of transitory PICU care models.

these practice changes.To address this gap in knowledge, a multidisciplinary group of clinicians, healthcare professionals, and parents of children with medical complexity used group concept mapping (GCM) to collaboratively leverage their expertise, experience, and perspectives, along with the existing literature, to conceptualize and specify what highquality care for this population entails.

Methods
GCM is a research methodology that uses both qualitative processes and multivariate statistical analyses to illustrate content pertinent to a specific topic. 28This GCM exercise was part of a larger effort to broadly elucidate the needs of long-stay patients in PICUs and then to address one of those needs-continuity of care-by establishing consensus guidelines for PICU continuity strategies.This effort was preceded by a comprehensive literature search that sought articles addressing long-stay patients and problems with transitory care, continuity of care, and PICU-related family-centered care.From this search, the research team created a bibliography, organized and cross-referenced by overarching topics, with a general summary of each topic followed by synopsis of each pertinent article with a link to the article.
Two investigators sought participation from a multidisciplinary group of stakeholders from the US and Canada with diverse backgrounds, relevant clinical expertise, and experience with children with medical complexity and prolonged hospitalization.The sex, racial, and geographic diversity of potential participants was intentionally evaluated during the selection process.Thirty-eight individuals were invited and committed to participate.The interprofessional, multidisciplinary panel of healthcare professionals represented pediatric intensive care, palliative care, complex care, neonatology, postacute/chronic care, nursing, social work, case management, child life services, music/art therapy, chaplaincy, language services, research, medical ethics, and hospital administration (Appendix; available at www.jpeds.com).Of the 38 invitees, 7 were parents of children with medical complexity who had prolonged stays in a PICU, none of whom had any affiliation with the authors or other participants.These parents were experienced patient advocates and were affiliated with Family Voices or the Courageous Parents Network; one parent was also a physician.The number of participants was intentional, to allow for sufficiently broad representation for GCM and for the same participants to work together on the subsequent continuity strategy consensus statements (Appendix).
The GroupWisdom platform (Concept Systems Inc; http://groupwisdom.tech)[31] Prior to GCM, all participants received the previously described bibliography with synopses to serve as a reference and to stimulate idea formulation.The GCM process includes preparation, brainstorming/statement generation, statement sorting and rating, and map creation.As the first step in the GCM process, the investigators created a focus prompt for GCM participants.The research team used an iterative process identifying the most important questions to elucidate crucial elements in the care of long-stay patients in the PICU, then condensed these into a single prompt that would most effectively utilize participants' expertise.The prompt read "For PICU patients and families experiencing prolonged lengths of stay, high quality care from the medical team includes ___."Utilizing their own professional expertise and experience, along with the provided bibliography, participants were instructed to complete the prompt with an unlimited number of short, unique, free-text responses.Deidentified statements were visible to all participants, as they were generated to both limit redundancy and stimulate additional ideas.With support from Concept Systems, 2 investigators performed idea synthesis-involving reviewing each statement, splitting multi-idea statements into individual statements, combining and/or eliminating redundant or conceptually similar statements, ensuring relevance to the project focus, and editing for grammar and spelling-of the provided statements.With access to the panel's original prompt responses, the remaining coauthors reviewed and collectively confirmed the appropriateness, completeness, and accuracy of the synthesized statements.
On completion of brainstorming, participants were provided the newly synthesized statements and asked to sort them into groups according to conceptual similarity of meaning and/or idea.Participants were not limited in the number of sorted groups they created.In addition to sorting the synthesized statements, participants rated each statement by relative "importance," using a numeric scale from 1 to 5, with 1 reflecting statements of least importance and 5 reflecting statements of greatest importance.Investigators reviewed importance ratings from each participant, excluding participant responses with homogenous ratings for all statements.
After completion of sorting and rating, the investigators performed an analysis of the statements to generate point and cluster maps.Multidimensional scaling resulted in a point map with each synthesized statement shown as a point in 2-dimensional space in a "galaxy" formation, with respective spatial orientation of statements reflecting idea association as collectively determined by the group's sorting exercise.The investigators confirmed an appropriate stress value of the map, ensuring that spatial orientation between each point (representing one single statement) on the map was accurately illustrated 32 and thus an appropriate visual representation of the results of the sorting exercise. 33Hierarchical cluster analysis of the point maps then used the Ward algorithm to merge like ideas into 3-dimensional maps of nonoverlapping polygons representing collective participant sorting and rating of statements. 33Cluster analysis generated 12 unique maps with 4-15 clusters.The investigators selected the cluster map that they believed best illustrated the data results. 33The research team then created domain names for each cluster.The domain names conceptualize the aggregate content within each cluster and represent key themes of high-quality care for long-stay patients and their families.Along with presenting the final cluster map, the research team described the domains with a representative statement and provided the 10 most highly rated statements.All statements, with their respective ratings, are provided separately (Table I; available at www.jpeds.com).Because this project did not involve human subjects, as defined by Health and Human Services Regulation 45CFR46, 34 Institutional Review Board approval was not sought.

Statement Generation, Synthesis, Sorting, and Cluster Map Formation
Thirty-seven invited individuals (97%) participated in 1 or more aspects of the GCM exercise.Thirty-three participants submitted brainstorming ideas, 34 completed idea sorting, and 35 provided importance ratings.All parent participants responded for each component of the GCM process.Project participants generated 265 statements through brainstorming, representing 313 individual ideas.Idea synthesis consolidated these into 78 final statements.Participants sorted synthesized statements into varying numbers of groups, ranging from 5 groups to 19 groups.The resulting point map stress value was 0.30, within the 0.20-0.36recommended range, indicating a good fit for the data set, with consistency between values in the similarity matrix generated from statement sorting and distances displayed on the point map. 32,33e cluster map that the research team collectively agreed best represented the data contains 8 nonoverlapping clusters (  II.

Importance Rating
As described above, project participants rated the relative importance of each synthesized statement.One participant's ratings were excluded owing to a lack of variability when rating respective statement importance.The top-10 rated statements and a comprehensive list of statements with their corresponding average importance rating, grouped by domain, are provided in Table III.Two domains collectively contained the 10 highest-rated statements.Domain 2, Humanizing the Patient, contained one top-10 statement, "Respecting the patient as a unique individual deserving compassion and kindness," which tied for the highest average statement importance rating, at 4.83 out of 5. Domain 1, Family-Centered Care and Shared Decision Making, contained the remaining 9 top-10 statements, with average statement importance ratings ranging from 4.64 to 4.83.The 8 respective domains varied in average aggregate statement importance rating, with Domains 1 and 2 carrying the 2 highest average aggregate importance ratings at 4.47 and 4.22, respectively, and Domain 7, Communication, and Domain 8, Continuity of Care, tied for the lowest average aggregate statement importance rating at 3.86 (Table II).

Discussion
This GCM exercise resulted in a multidisciplinary, expert-informed framework conceptualizing and specifying high-quality care for PICU patients and their families with prolonged length of stay.Health outcomes for children with medical complexity have been explored through GCM 35 ; this study leveraged GCM to frame high-quality care for this subpopulation specifically.Similarly, although guidelines for general family-centered PICU care are applicable to long-stay patients and their families, the use of GCM complements those recommendations by narrowing the focus on this uniquely vulnerable pediatric population. 36,37GCM goes beyond commentaries from a single expert or a few experts by synthesizing the experiences and expertise of a diverse group of key stakeholders, including family members with lived experience.
The generated cluster map empowers health care teams, hospitals, and health care systems to prioritize initiatives and programmatic changes that address opportunities to provide highquality care.Eight domains are established containing explicit statements that collectively conceptualize themes of high-quality care for patients and families experiencing prolonged PICU stays.The most highly rated statements focus on relationship building, burden sharing, and proactive planning informed by patient and family values (patient/familycentered care), as opposed to statements representing medical expertise or delivery of information.The 2 domains with the highest average aggregate importance ratings were Family Centered Care and Shared Decision Making (Domain 1) and Humanizing the Patient (Domain 2).Domain 1 contained not only the highest average statement rating at 4.47, but also the highest number of statements of any domain at 20, including "realistic discussions of the patient's/family's goals of care in the context of expected prognosis" and "patients/ families feeling and being heard," among others.
Notably, the results illustrate and reinforce that prolonged PICU admission impacts not only patients and families, but also institutional resources and personnel.Domain 3, Clinician Supports and Resources, emphasizes that high-quality care for long-stay patients and their families requires support mechanisms for the PICU team.This domain contained the representative statements "regular assessment of the emotional wellbeing of providers" and "professional caregivers empowered with tools and resources to mitigate stressors.,"among others.Potential candidates for team support mechanisms include nursing team rotations for long-stay patients, compassion rounds for exhausted providers, scheduled and as-needed check-ins by leadership of respective disciplines, and resiliency training for team members, 38 among others.]23,36,37 Considering that moral distress is a positive predictor for leaving a profession and the unprecedented nursing shortage nationally, renewed efforts to promote health care team member well-being and thus the highest-quality patient care merit serious consideration.
0][41] In contrast, this study's data and related cluster map draws attention to the inseparability of in-hospital and out-of-hospital dynamics and the coordination challenges that long-stay patients must navigate.Several statements illustrate this phenomenon, including but not limited to "engaging the patient's primary care provider and longstanding subspecialists in important decisions" and "preparing families with the knowledge, skills, equipment, appointments, and providers needed to care for their child after transfer out of the PICU."It is revealing then that most, if not all, of the 8 cluster domains describe constructs that are not necessarily isolated to the PICU or even to the inpatient hospital setting as a whole.This suggests that during prolonged PICU hospitalizations, treatment plans and decisions should not be framed as isolated events or siloed from the rest of the patient's care overall.High-quality care encompasses planning for potential impact to the home environment, communication and partnerships with outpatient providers, attention to PICU team member well-being, and respite for exhausted parents.
For units and institutions wishing to use these study results to inform practice changes to improve the care of long-stay patients and their families, prioritizing efforts can be challenging.Even though there exists a hierarchy in the importance ratings of both individual statements (Tables I and III) and average importance ratings of respective cluster domain statements (Figure,Table II), the differences in absolute values are modest, with the first and tenth top individual statement importance ratings differing by only 0.19 (4.83 and 4.64, respectively) and the first and eighth cluster domain importance ratings differing by 0.61 (4.47 and 3.86, respectively).Acknowledging minimal differences, we recommend that institutions and healthcare teams adopt a multifaceted and personalized approach to prioritization, matching self-identified needs/barriers of a respective center with the cluster domains with the highest yield and most feasible foci to address.It is clear that all domains and their respective aggregate statements are of substantial importance to the panel responsible for this GCM effort, and the sentiment that there is a "wrong choice" for prioritization because of a slightly lower importance rating should be discouraged.We do suggest that Domain 1, Family-Centered Care and Shared Decision Making, with both the highest domain importance rating and 9 of the 10 highest individual statement ratings, be weighed heavily in any potential practice change, and that providers individually and collectively recommit themselves to compassionate, conscientious patient/family-centered care. 36,37Many of the statements contained in Domain 1 describe opportunities for setting expectations, establishing roles, and placing decisions in the context of family values.Additional considerations for institutions/PICUs could include enhancing partnerships with families and implementing primary physicians and nursing teams to promote relationshipbuilding and communication and streamline consistency in care delivery. 38is study has several limitations.First, aspects of the GCM process are necessarily subjective, requiring members of the research team to use their expert judgment and an understanding of the project goals to guide specific decisions.For example, the research team excluded one respondent's importance ratings owing to a lack of rating variability, and 8 domains were chosen for our final cluster map, as we agreed that those specific cluster domains best represent the project's findings.It is reasonable that a different group of researchers might have selected a final cluster map with a different number of clusters.Second, the total GCM participant group was relatively small compared with that in some other GCM projects.It is possible that a larger number of participants might have elucidated additional constructs pertinent to the care of long-stay patients.However, given the range of disciplines and perspectives represented, there was collective agreement that the panel was appropriately representative.Moreover, the investigators agreed that it was advantageous to have the same participants work together through GCM, and then the subsequent consensus guidelines, as a larger number of participants would have resulted in a considerably less manageable, and perhaps less fruitful, consensus effort.Third, rating of synthesized statements is inherently subjective, and personal experience as well as professional discipline might have biased statement ratings.This also could be viewed as a strength, as the broad representation and diversity of participants likely muted biases of any particular individual.Fourth, participation in each component involved in the GCM process was incomplete, with some failing to either submit brainstorming, perform idea sorting, or assign importance ratings to statements.This could have introduced bias depending on which participants were not represented.Fortunately, with 89% of participants completing brainstorming, 92% completing idea sorting, and 95% completing statement importance rating, the impact of nonparticipants should have been minimized.Finally, the GCM methodology itself is complicated and nuanced; for example, some statements may seem incongruent in their respective domain.Statement 62, "allowing nurses who consistently care for the same patient over weeks/months an opportunity to take care of other patients in order to maintain their skills and/or avoid burnout," appears out of place in Domain 2, Multidisciplinary Coordination of Care; however, the location of statement 62 is not because of its close relationship to other statements in its cluster, but rather because of its broader relationship to other statements remote to it on the map (ie, its high bridging value). 33isting models of care tend to best support short stays, leaving patients and families enduring prolonged PICU admissions negatively impacted and their care suboptimal.In this study, GCM empowered a multidisciplinary group of medical experts and family members to conceptualize and specify what is high-quality care for these long-stay patients and their families.The resultant cluster map presents a framework for optimal care, which can inform initiatives and policies to better meet the needs of this inherently vulnerable population and address shortcomings of the transitory nature of traditional PICU care models.Final cluster map illustrating 8 domains of high-quality care for long-stay PICU patients and families, respective statement numbers contained within each domain, and respective cluster importance layering.

Table II .
Cluster domains with synthesized statements, comprehensive The option to withdraw life-sustaining interventions, whether in the hospital or at home, with appropriate support in terminally ill patients 4.43 68.Anticipatory guidance to patients/families on transitions out of the PICU (eg, criteria for safe transfer, postdischarge challenges, resources needed) The ability for the patient/family to request a "primary attending" or similar person, even when they do not meet the unit's normal criteria for assigning one J Pediatr.Author manuscript; available in PMC 2024 January 01.